02. My Mental Health Journey: Part 1

(upbeat music) - Hello and welcome to a chat with Uma, with me, your host, Uma R. Chatterjee. On this podcast, I bring together all of my roles as a neuroscientist, researcher, board certified mental health peer specialist, mental health advocate, community builder, and a survivor with lived experience to bring you honest and unfiltered conversations exploring our true human experiences in their fullest form. Every week, I'm bringing you conversations bridging the gap on all things neuroscience, psychology, mental health, lived experience, advocacy, psychedelics, and more. This is a space for raw unfiltered truth to truly explore ourselves for who we are and how we are. I cannot wait to connect with you, answer all of your questions and co-create this with you. Welcome to a chat with Uma. Hello, everyone, and welcome back to a chat with Uma. I am just so honored and grateful that you are here and that you are taking the time to share space with me and create this together because your support and love and time mean more to me than you'll ever know. I'm blown away by the amount of support and kindness and love that I've received from you all and I just want to thank you for your generosity and being willing to show up in this way and co-create this space with me in this new, beautiful, radical, honest, compassionate and open way. So taking all of that, I am fueled up for this next episode, which I see to be kind of a part two to my last episode. So if my whole story was kind of part one of setting the scene and foundation and framework and context for this podcast, then I think that this episode is part two of that. This episode is my mental health journey, reflections and lessons and just sharing a high level overview of the whole thing. There's so many things that I want to talk about on this podcast and it's so hard to choose exactly what to do next, but ultimately it became a no-brainer. That episode two was going to be talking about all things my mental health journey for many reasons. Number one is I'm just asked about my mental health journey a ton from all of y'all and I think there's a lot of reasons for why y'all want to know so much about it. I think it's because we don't talk about these things enough and I happen to be someone who is just very open and has been very vocal about parts of my journey. So naturally y'all might have felt like I'm a safe space to talk more about it and to give more of the full picture because again, different situations and different speaking engagements and different conversations warrant different parts of my story, but y'all know that there's been a lot. It's been a lifelong journey with so many turns and twists and experiences and lessons. So I am grateful that y'all have asked and I'm so willing to share. I think that honestly the curiosity and asking is a symptom of the fact that we don't talk about this enough and I know that it's equally valid that there is so much stigma and it's hard to talk about these things out loud and I'm here to create the space to change things and to make that less of a reality and I'm here to do things differently and to create the space so that you, me, all of us can change that and we can just start being honest and start being open and we can learn from each other and grow and most importantly with talking about it, with being open, we can shed the shame and the isolation and the unnecessary pain that comes from all of the byproducts of experiencing mental illness or mental health symptoms in the society we live in, in the world that we've been steeped in thus far where it's not okay to talk about how we truly are doing and we've seen so many horrific byproducts of that. So we're here to change that. Another reason why this episode is coming so soon is because so much of my work comes from this story, my research interests, my research projects, my advocacy at large, my awareness initiatives, my work with intersectional identities, outreach, of course, being a mental health peer specialist, self-explanatory, all of those things come from this story because this story is such a formative aspect of my life and what inspired me to want to make a difference and change things and has me showing up even in the hardest of moments to keep going and do what I can to make a difference across all the fields, all the spaces that I've been. It all comes from my mental health journey so it would only make sense to give context about how this all has played out from a high level and from there we can start having the conversations and discussions and creating this space of vulnerability and awareness. Also, it's so important to me with this podcast and with my work to foster community from sharing stories and create a safe space to share our lived experiences and to share in each other's experiences and know that we're not alone. That's honestly the whole point of everything I do. It's to raise awareness and the point of raising awareness is so that we all suffer less and we all experience love and connection and support and authenticity and being seen for our true selves and healing and growing together. So of course, I have to be an integrity and start by creating the space myself and opening it up to all of y'all to share back with me with each other and most importantly, be honest with yourselves about what it is you've been experiencing and how that's shaped your life. And I would venture to guess that's why you're here because you see within me what you might have experienced within yourself and it might not be the exact same experiences that you or I or anyone else listening to this has. It's more so the depth of the suffering and isolation and pain and stigma and hiding and confusion and perhaps the lack of awareness, mysticnosis, abuse, lack of treatments, all of the things that come from our various identities and from experiencing mental illness or mental health symptoms that we can all connect on together. And having conversations is what inspires thought within ourselves. Perhaps we haven't allowed ourselves to think about the context of what it is we've experienced or the truth of what we've been experiencing because we are trained as humans and a society to suppress that which is unacceptable to talk about. And the truth is without a filter, mental illness is not something that's okay to talk about. Yes, there have been leaps and strides towards more openness about mental health and mental illness. And as I'm sure so many of you can relate to, it seems to be like there's only certain diagnoses or symptoms that are more okay or accepted to talk about probably because they're more common unfortunately or because they are less extreme in people's perceptions, people can relate to certain diagnoses more because they themselves have experienced it or they're less scary of symptoms, they're less taboo. And then there's other parts of the experience, other diagnoses and symptoms that are just not okay to talk about or they're completely misunderstood, they're stigmatized. And the same mentality that allows people to talk about certain parts of mental illness then suppresses the entire other side. I'm here to change that because that's not okay and that breeds so much isolation and stigma. I'm gonna keep using those words because that's what's coming up for me. But we don't need to live in a world where on top of experiencing the pain and suffering of mental illness and mental health symptoms also were experiencing the byproducts of judgment and shame and isolation and everything that comes with not being able to be honest and experience our true selves openly with the people in our lives. I envision and hope for a world where we can just be ourselves and be radically honest and be held and seen for that and then be able to access the proper support and care and treatment and community support and upliftment so that we can heal across all parts, across the medical side and also in an interpersonal human way. So that's why I'm doing this episode. It's the Genesis and Foundation of everything I do and especially for this podcast. And so I would consider it part two of explaining the framework and understanding of this podcast. So in this episode, I'll be talking about several different facets of my mental health journey. And really the way I'll be sharing it is talking about symptoms and navigating existing with them and treatment and lack of treatment and factors that contributed to the trajectory of my journey with mental health and becoming aware of things and navigating kind of the treatment and healing part of it, but in terms of things like contributing factors and epigenetics, trauma, environment, biology, all of that, those I see as a different conversation, they're each really its own conversation and they are more so delving into more personal experiences and the confluence of factors that result in how we exist. So this episode is more so just an overview of the trajectory of my story and as you will see, it will become very obvious. where my points of reflection and the lessons I want to share with you all and the reasons I do everything I do in research and advocacy and as a mental health peer specialist, that's where they all come from. So in this episode, I'll be talking about my lifelong journey with mental illness, early signs and symptoms, diagnosis, misdiagnosis, treatment attempts, the types of medications and therapy have gone through so far. There are mis-treatment and abuse in therapy. That's a big one that is not talked about as much and is a very real and formative part of my story. So we'll definitely be going there. Comorbidities, my various identities, their intersections and how they played a role in and mediated all of the other things that are a part of mental health journey like access and awareness and stigma. And then we'll talk about where I am now and where I think I'm going. And of course, it's important to say that this is not a linear end point to my journey at all as you will hear. But the reason that I'm sharing this now rather than waiting even longer to share this is because I do think I'm at a place where I have gathered a majority of the understanding of how I work and how I got here. It doesn't mean that there won't be more insights in the future, but I think I'm at a place where I've got a pretty good grasp to be able to share this as a story. So of course, there's going to be no filter and I will be sharing everything related to this except for some names just in consideration of privacy. So this episode is going to have a part one, which is what you're listening to right now and part two, which we'll come out next Monday. And that's because this story, even at a high level, is long and has so many twists and turns and nuances and things to consider. And I don't want to gloss over anything and not give topics their due justice. So part one today's episode will cover from birth to about 18 years old because that whole time really sets the foundation for why all of my identities really contributed to having a lack of access to treatment and the various parts of stigma and abuse that played into going without proper care in any form for so long. And I just like a lot of the nuances of how my symptoms were showing up and developed and how they were not identified. And in there really are reflections and setting up for part two next week, which will be talking 18 onwards, what it looked like to start getting more proper access to treatment and yet still going almost a decade without proper diagnosis and treatment. And then a very abusive illegal therapy situation that happened and just the twists and turns that got me to finally accessing evidence based treatment after so long and why that should not be happening to people and how we can mitigate that in other people's experiences. So today we'll be setting the foundation for next week. And I'm so honored that you're here with me to walk through this whole journey with me and all the reflections and lessons that come. Just a quick disclaimer that none of this is being shared as medical advice or medical recommendations in any way shape or form. Everything I'm sharing here is from my lived experience and my own perspective. None of this constitutes a relationship as a mental health peer specialist or anyone in a professional capacity. This is just my experience, my processes, what I've gone through personally and just general information to potentially empower you to make your own decisions and navigate your own journeys on your own way. But none of this is medical advice or any formal guidance for anything. And let's get into it. My mental health journey, reflections and lessons and all the things as always. So I'll briefly set the scene for what I was born into because it does play a role in my trajectory of mental health access and awareness and all of the things. Of course, I was born into chaos. I was born into a very toxic environment of neglect, abuse, physical, mental, emotional, later sexual and just a very unstable environment. And I was also born into a immigrant, South Asian family where there was already financial toxicity from the nature of being an immigrant in the states. And more importantly, there was zero concept of mental health awareness. But not only was there a lack of access to mental health awareness or treatment, but there was also a huge resistance to anything related to that topic because it was perceived very much in my immediate family. And also in the context of my culture and my community as something that doesn't really exist and is a symptom of being spoiled and having too much privilege in America compared to where people from my community came from and just creating more problems. So that's the framework for what I was born into and basically being born with mental health symptoms. So being a child in the situation, I just described I was born and my earliest memories are just completely colored by fear and confusion and a hell of a lack of safety and attachment to my caregivers. I also didn't grow up with any family around me. So no grandparents or aunts or uncles or cousins or really anyone. So it was just the immediate family I had around me. And in everything that they were going through with each other, there was a lot of domestic abuse and violence and whatnot. I was just kind of neglected and I was also very much hated because I was a reminder to my caregivers of they're very toxic and unhealthy relationship that they wished that they were not a part of and that I was born out of obligation to societal and cultural norms. So then neglect really comes from there and also from objectively being so busy trying to make ends meet because of financial toxicity. So there's a lot of that in terms of my affect. I was just extremely afraid of everything and I started ritualizing as early as I can remember right three or four years old to the point that my clinicians have determined that I was born with OCD to the best of their ability that they can determine that. And that comes from a combination of how early on they can track the severity of my symptoms and the fact that the way I score on OCD measuring tests is so high and so severe and so pervasive that there's in their mind no way that I just developed it later on in life. It's also indicative based on a lot of biological confluence of factors that play into other diagnoses and things I have we can go into that another day that's fascinating to me for obvious reasons me search but nonetheless I was born with OCD and I started ritualizing as early as I could remember things like taking the prayers I was taught and eating to compulsively do them 39 times at least once a day but really in any given situation that made me afraid so that I could exert some semblance of control and I never grew out of that I also had to do everything a certain way or otherwise it was not complete it was not okay in the world was going to end. And I never trusted my memory so I was constantly seeking reassurance to make sure that I was correct or right about everything or that things actually happened. And a lot of that did come from environmental factors because OCD latches on to what is most important to you and also you know any fear that one experiences with OCD can become an obsession it's not typically what we think the fears are of the fear of being unclean or the fear of things not being perfect right it can latch on to any fear so if I'm constantly being fed fears then my OCD is going to latch on to it so the fear of leaving the door unlocked the fear of messing up at something the fear of being incorrect about what happened which I was gasoline by most of my reality so that is not really a fear that I developed nonetheless that was something that was very clearly happening and it was not even labeled as such it was not identified if I ever express fear about anything it was just me it was just attributed to me being problematic and annoying and needing attention and just thinking too much I got that all right. I thought too much on top of OCD I also most certainly had major depressive disorder from my childhood because I was just always toggling at hopelessness and fear of continuing to exist and honestly contemplating the point of existence since I was in elementary school to the point where I really didn't have friends and was the person who was just saying all this weird stuff is like a five six seven year old and being met with what the fuck by children around me because most children weren't thinking about that stuff so it took me a while to realize that I couldn't exactly just be honest about the things I thought about the nature of existence the point of why we were here why I suffered so much why people were so mean and so cruel why things were so scary what was the point of anything so that really that really bread isolation and a toggling of either being myself and being completely rejected or having to try to mask and still being really weird or labeled as weird so all of that was happening and of course anxiety just pervasive anxiety social anxiety especially because of the rejection and feeling like I couldn't pick up on social cues of course I didn't have language for any of this at the time so keep in mind that a lot of the reflections I'm talking about now I had no concept of any of this happening. In my mind, I was just being a person and I was sucking at being a person because other people didn't seem to struggle with being a person as much as I did and I was also constantly told that I was the problem if I ever raised any concern in my child world with my child language about life. So it's just I internalize it completely in something that we do as children when we cannot make sense of the world and when things are so chaotic outside of us is we make it about us because that's the only thing we have control of. It's the only perception of control or of understanding or conceptualizing our reality. If it's not anything outside of us, if we are supposed to trust our entire outward experience and our caregivers and our environments and they couldn't be the problem, then it had to be us, right? So that really defined my childhood and I just felt like I was dysfunctional and I needed to just try harder and be better and the really only framework I had for how to be happier is I needed to do better and be more perfect and perform better at all the things I was doing and just win more awards and gain more love and more self-esteem because I didn't really get any of that and in fact I was generally demeaned for existing in the first place. So it felt like if I did stuff I could catch up to just being even at zero in terms of self-esteem and love if that makes sense. So all of that's happening on top of that I am and I was a very neurodivergent child in person and there's different things that indicated that on paper but it was never labeled as neurodivergence. It was just seen through the lenses of what was positive. So I was in the gifted and talented program, the magnet program for all throughout my childhood. I was kind of known in elementary school for being a know-it-all and for reading like a hundred books a year I went through my certificate binder recently after like a decade of ignoring it because trauma from performance and stuff but I just went through it recently and I just I had awards from every class for everything about reading the most books and being at a college reading level when I was seven years old and just scoring exceptionally high on every IQ test and every intelligence test and whatnot and of course none of that's a value judgment of being good or bad but at the time that's kind of like the only thing they were picking up on for me being different and me like my brain and my functioning just being different but on the positive side it was always framed as positive and was never considered like what else is this person experiencing and is this indicative of something else. I also didn't speak till I was four years old and at the time it was considered maybe I just had deficits and I was behind or I was hearing too many languages so I didn't know how to talk because I was surrounded by five languages growing up but looking back now after speaking with speech-language pathologists and other clinicians I am characteristic of something called Einstein's Syndrome which has to do with intelligence levels and being developmentally behind in speaking and what that results in as an adult or later in life and those were all classically related to my neurodivergence but it was ever put together because again no one was thinking about my mental state no one was really even thinking about my physical state but they were especially not thinking about my mental state whether it be symptoms or just being different or how I felt being indicative of anything that mattered so these were all just things floating around. I also have sensory processing disorder and I was and being overstimulated and overwhelmed constantly on a physical level definitely fed into a large part of my anxiety and being hyperaroused and being overwhelmed all the time but I only found out this diagnosis in the last year so this was most certainly not a consideration for me I just thought that the world swirled around all the time and I was the problem and I also had a nonverbal learning disability. I say had I say something is in past tense but I have them now it's just I'm talking about having them in childhood and it not being recognized or contextualized at all so I had a nonverbal learning disability specifically with visual motor problems so I had a really hard time reading faces or reading bodies and also being spatially unaware and being really clumsy and that was all just attributed to me being behind and annoying and not as good at stuff and the visual motor stuff didn't really come out so much as I experienced the consequences of it because I was just like always feeling disconnected from people and confused about their state of being and asking questions and seeking reassurance through OCD because I didn't understand people's facial expressions and people it did not help with the isolation and being bullied and not having friends so the last thing I'll say about my childhood before we get into more how this transformed is that I have been diagnosed as having complex PTSD from my childhood up to the events where I started having single event classic PTSD so complex PTSD is recurrent chronic trauma with things that I could not internalize in process I did not have the tools or the support to be able to process my reality because frankly it was being incurred by the very people who would have helped me if any which were my caregivers and my immediate family so I was just cooked in developmental trauma from a very young age and that kind of leads me to where I see the culmination of all of these underlying childhood developmental factors coming together to get to a threshold of this is too much and I cannot function anymore and then my very steep downward spiral so when I was 12 as I talked about in the last episode but I'll briefly recap here I went to India by myself and I stayed with family members and I was sexually abused for a whole month every night by one of those family members and then long story short I came back I had no concept of what any of that was what the anatomy was what sexual anything was I just my body just freaked out and knew that that was happening and it was absolute petrifying fear and pain that I had never experienced in my whole life so I finally voiced that to my caregivers and was basically told that I made it up and there's no way that could be real and I was just seeking attention and I didn't understand just general affection from people so that wasn't real that ever happened so I'm sitting there 12 years old going into seventh grade just being sexually abused on top of everything that we've talked about and having no way to cope and so that turned into excessive self-harm and very strong suicidal ideation and of course PTSD now I say that this is kind of the beginning in my mind of single event PTSD but there's definitely other single event massively traumatic things that happen with domestic violence and things prior to 12 but in my mind it kind of all if anything predispose me to this specific trauma really precipitating in confluence with everything that happened before and everything going on around me in my general disposition it all came together to precipitate that downfall so that's why I talk about this as like being kind of a turning point for me with my mental health journey so I'm here in this place really at this point just completely hopeless and confused and looking to end my life and just deep into self-harm and all of the OCD depression anxiety social anxiety complex PTSD panic disorder neurodivergence all of those things and then the PTSD undiagnosed unidentified untreated no concept of mental health or any formal understanding at all of mental health being a thing also completely unsupported by my culture my family being taught to suppress everything and nothing is real and gaslighting me out of my reality and just hopeless and confused there was one small thread of support and a beacon of light for me that truly I attribute continuing to exist at that point and moving forward to and that was my gifted and talented teacher in 7th and 8th grade in middle school who noticed that I was self-harming and that I became completely withdrawn and was struggling so badly and it was showing somewhat in my coursework but I was able to through luck and just harnessing whatever I had going on between my ears like without doing any effort to get by well enough that in my advanced classes I was forced to take and that I was already in that I just got by enough and then most people couldn't tell but my teacher could because she knew the level to which I performed before and what it looked like now but more importantly she was watching me and could just see one one she could see that I was wearing full sleeves covering my whole body even in the depth of a hundred degree Texas weather and also she just knew the classic signs and knew I was going to the bathroom and then asked to look at my arms and legs and so she figured that out she tried to fulfill her duty of communicating all of this to my family and in a way of trying to get me support and was just met with complete dismissal and anger and was and just got a taste of what it was like to be me in my family because of the way she was treated and realized that that was a very unsafe place for me to get any sort of support that there's really no chance in that she She sort of took me under her wing while she could, as a teacher who was so overworked. and had so many people to be responsible for. She took the time to take me under her wing and keep me after school as long as she could to talk to me and have me sort of engage in some self-help exercises to try to see that life was more than what I was going through. Of course, there was no discussion of formally what happened to me or anything like that. She just knew that I was struggling deeply and wanted to help me and what she kept telling me what I think ultimately got me by and resulted in me not dying by suicide was she kept saying don't employ a permanent solution to a temporary problem and she surely believed that when I was going through a temporary and I could get through it, whether that meant getting the fuck out of my house eventually or just getting through whatever period I was going through. And I'll be honest, most of the reason why I most of the reason why I complied with that was because I lived in a framework of doing what people told me to do and not doing anything to risk the love and support I was receiving and this teacher was probably the person I had in my perception received the most love and care from ever in my life because I had received so little from anyone else, my family or my community. So I really didn't want to disappoint her and in that framework, if not wanting to disappoint her, I guess it kept me alive because I didn't want her to hate me or get mad at me for messing up. So I just self-harmed more in secret in ways she couldn't find and I obviously continued to live. And that got me to the end of middle school where pretty much the end of everything I got admitted to the mental hospital for the first time and it was really, really scary. It actually came from an attempt from one of my caregivers to get me arrested as a 13, 14-year-old for not complying with everything they're saying like in the house, nothing crazy just like being combative and being everything I was as a person. They thought by calling the police on me that I would, I don't know, fall in line or be taken to jail but instead what happened is that the police realized I was in a very severe, horrific situation and I was very much struggling with mental illness and so they took me away from the house in a police car and took me to the mental hospital and admitted me there. You know, against my will, but that happened. And what came out of that really was that for the first time in my life, I was evaluated by mental health professionals, psychiatrists, psychologists, those people and it was very quickly determined that I had a major depressive disorder that I was suicidal and that I needed help. So with being released to my caregivers from the mental hospital, what was told to them was I needed to be seen by a professional ASAP for medication and treatment for whatever it was going on, that, you know, depression and anxiety and suicide ideation and whatever else and if they didn't do that, then there would be legal consequences. So, you know, CPS or general governmental intervention for maltreatment and neglect. So with that fear, first I was taken to a therapist and my caregiver of a strategy behind this was to get me to see an Indian therapist because in their minds, an Indian therapist would totally understand that I was just acting out and I was the problem and nothing was wrong and we could move on and I didn't need to keep doing that. Instead what happened was that Indian therapist realized very quickly that I was in a very abusive, neglectful situation and called CPS on my family to come investigate the environment I was in and what I was going through. That obviously did not go well with my family. So the result of that was I was never allowed to see that therapist again, of course. They did everything they could to ameliorate the CPS people. So what happened was they also insisted that I needed to go see mental health professionals, a therapist and a psychiatrist. So once again, I was put into therapy to the goal of just like the bare minimum evaluation and then move on and very begrudgingly, I was shown to a psychiatrist for like a 10 minute appointment and what happened was the therapist. I got to see a few times. I think it was mandated that I saw them a certain amount of times and I got to see them that minimum amount of times and then I didn't see them anymore and I actually felt like I could connect with this therapist. But one of the things that happened was this therapist really quickly told me that I should get emancipated as quickly as I can and get the fuck out of my house and out of my family. And so and then I made the mistake of telling one of my caregivers that this therapist told me that I should get emancipated as a way of validating what I was thinking I was going through and just as a way of fighting with my caregiver in a horrible situation. Once my caregiver heard that, it was like game over. I had met my bare minimum requirement of the number of times I needed to see this therapist for CPS and like legal bodies so did not ever get to see that therapist again and in terms of the psychiatrist, I basically was seen for about 10 minutes and was prescribed in antidepressant, serenetrolene or zooloft. And the thing is with prescribing antidepressants or medications in general of that nature, what I know now is that you start at a lower dose for your body and your brain to acclimate and tolerate the medication and then you up the dose to whatever dose you need or whatever dose makes sense. So they started me at this lowest dose but my caregivers basically decided, okay, I'm seeing that doctor one time, I'm getting this prescription to satisfy the requirements of the legislative bodies watching them and then they transferred my care to a primary care physician who once again was Indian and did not believe in mental health and found a loophole to where they kept me at that low dose and never increased it so it wasn't really doing anything for me but it was satisfying the requirement and I was just on that low dose for a few years until things came to a head again. So that was around 13 and then to really fill you in on what 14 and 15 looked like, it was everything I just said and also I just joined a cult at the end of middle school going into high school which I cover in more detail in the last episode and we'll do a deep dive on the cult itself but what's important to know in relation to my mental health journey was that I joined the cult as a result of trying to answer the question why am I suffering so much because of course I was tributing my suffering at this point to myself because I had been gaspled into doing so and as a child again when you can't make sense of the world around you you make sense of it through blaming yourself and looking for how you're contributing to it because that's all you can do when you're trusting your outside environment to be accurate and good and taking care of you the way they should be the way we're wired to believe and trust in. So I joined a cult because they gave me the solution to my problems and the understanding supposedly to why I was suffering which was the concept of karma in my past life whatever I did would therefore result in any of the consequences or benefits that I reaped in this life and so I was suffering because apparently I really fucked up in my last life and the solution was to dedicate myself to the cult and purify myself and become more clean and better and dedicate myself to the cult so I could be freed from this curse of being reincarnated over and over into this dreary world and I could instead join the divine in the divine world and be liberated and blissful all the time. That was what got me into the cult directly as a relation to my severe unhelped lifelong struggle with mental health and very much specifically with OCD because I was seeking certainty about the nature of existence and why we exist and why things happened and really looking for some sort of answer to satisfy my unending confusion and this the way they presented this answer to me was the most certain answer I had heard so far and it almost made enough sense and with this pathological need for certainty I jumped onto it and held on for dear life even though there are parts of me that really did not agree and question it so there was the cult and another part of what was going on around 14 to 15 was the culmination of my lifelong eating and disordered eating and body issues into bulimia so briefly the context around that is I have been big my whole life I was very big as a kid and it didn't make any sense medically in theory I was doing all the physical activities until I couldn't because I was getting really sick physically and all this is covered in depth in my story in the last episode but to sum it up I was big people didn't know why so the solution from my caregivers particularly one of them was to lessen and lessen my food intake so elementary school I was just being given less and less food constantly being told to monitor my food being watched by my food if I was gaining weight which I was it was blamed on me that I was somehow sneaking food which how that was possible I wouldn't know because I didn't have access anything because I was a child but to make sense of what didn't make sense to them they thought I was just sneaking food and so what it has been labeled as now by clinicians and experts is I was effectively being starved going through starvation and so I already had a horrible complex around food in my body and then around 13-ish I really started diving into diets both influenced by the outside and from within. And it got to the point where my caregiver was so consumed by eggs with my body that they started putting a bike lock on the fridge and having a code that of course I didn't have access to just my caregiver and everyone else in the house had access to. And so I like truly could not even get food if I wanted and I was completely at the behest of whatever they wanted to give me which was not enough ever and I was so so hungry and just as a sidebar to give you more insight into that dynamic. The other people in my household did have access to that code and so they would often go in and take food without my caregiver's permission and it was always blamed on me because I was the easy-skate goat even though I was the one person who did not have access to the spike lock code and that just furthered and furthered that disdain for me and the motivation to keep me away from food even though I didn't do it, I didn't have access to it and I was already being starved but that all sets the scene for what my relationship was already like and how bad it was to then develop into bulimia. So around 13-14 years old as a combination of external factors for my caregivers and the people in my community as well as you know motivated within as a survival school for me I started going on diets and trying every diet out there to just magically lose the weight on top of doing whatever physical activity I could even though my chronic illnesses were really flaring and I just had no energy. So diets felt like it would be able to help me but also since I didn't have the energy to go like work out for 10 hours a day maybe it would take care of some part of it so it started off with you know just the usual restriction and very strict calorie counting and macro counting everything had to be on an app or I would not eat it like a chicken breast so like I had to log it or I wouldn't eat it and then it became things like vegetarianism because the cult was vegetarian so also I figured it would be a cool way to lose weight if I could sustain it and then it became more formal diets like the keto diet and the atkins diet various proteins supplement shake protocol things from MMMLems that I won't name right now but we could talk about another day perhaps and of course you know those work a little bit and then they don't and it was just really frustrating and really unhealthy of course but I had no concept of it being unhealthy and no one really knew how bad everything was with the food except for the people around me and they thought it was okay so around 15 that turned into bulimia because I realized that if I'm ultimately counting calories or counting macros and you're measuring in versus out then in theory if I was so hungry which I was hungry all the time and thinking about food all the time because I was starved basically my whole life if I just eat something to quench the hunger and then I threw it up it wouldn't count right so I remember the very first time that I did it so vividly I was doing one of my side hustles I was babysitting this family and the kids were just hanging out and eating and there were bags of chips and I was so hungry and I was trying so hard to be disciplined with my diet and I knew those chips I absolutely could not have but I was so hungry and there was really nothing else available so there was a snack-sized bag of cheetos and I was like well if I eat it and then I throw it up it doesn't count so I tried it and I cannot tell you the amount of control and in the moment euphoria because that is a thing that happens with bulimia it's like a chemical reaction to what you're doing there's a moment of just freedom before of course all the shame and pain and the horrific parts come after but in that moment what I experienced completely changed me and became my new way of life so I became a full-on bulimic person I was throwing up several times a week if not every day sometimes even multiple times a day and it was really just a measurement constantly of how much was I eating was I going over my limit was this a food that was bad if so I had to purge it or I would not be okay and I would go to all ends of the earth to make sure that I purged properly and the bulimia lasted for about eight to nine years and we'll talk about how that resolved and all of that later but it was very early on I was throwing up blood and that was just normal to me and the more I could throw up the more I felt quote unquote better about myself so that's all going on till about 15 and then I went to the mental hospital for the second time now how this happened was kind of similar to the first one but a little more extreme so this time the long story short there was a disagreement with one of my caregivers about something really stupid like something with my physics homework and me not understanding something and so my caregiver was getting very angry with me and getting domestically abusive with me and throwing things and whatnot so I decided to tell my caregiver that I was going to leave the house and go down the street four houses down to my friend I was at their house often so this was not a normal plus my friends family was pretty aware of the situation at home and let me come over anytime so I needed to get away and I told my caregiver I am going down the street and in the process of trying to stop me from doing so through a lot of things at me and then took a pair of scissors and stabbed me in the arm and that plays role later so I go down to my friends house I'm just hanging out trying to decompress not sure too many details but just let them know that I'm a bad situation happened and then the police showed up and took me from my friends house to my house and let me know that there is an accusation that I ran away from home by my caregiver now at this point my other caregiver was still living there it was at the tail end of my other caregiver living before they divorced and the other caregiver left so there was a witness to this whole thing and the other caregiver stepped in and let the police know that number one I did not run away and number two that the stab mark on my arm was incurred by my caregiver but what my caregiver told the police was that I did that to myself and I needed to get arrested for that and for running away from home now unfortunately for me for this the whole thing was unfortunate but especially so because I had been self-harming and I had scars and there's a lot of proof right so it was weaponized against me to prove that I indeed did stab myself with these scissors because I had done other things even though I had not done that and the police doing their job had to just go with the proof they had and be extra safe in case there was a chance I was self-harming and took me once again to the mental hospital the same one I had gone to the first time and this time the mental hospital went pretty similarly to last time the notable difference this time though was when I was once again evaluated by the various mental health professionals this time I had to inform them of what it happened since the last time and without intending to I basically informed them of the lack of actual treatment I had received and the lack of accountability that had been really enforced by anyone to get me what I needed in between hospitalizations so they really learned about how I barely got to see anybody consistently and how I had been on a sub optimal level of medication that was really not doing anything which they made me aware of and how the abuse in the maldreatment were continuing so this time they had more ammunition to hold against my caregivers to hold them a little more accountable to getting me more treatments because I was in a state of crisis and things had not changed and I was just at risk and there was a lot of illegal shit going on so this time there was a threat of CPS once again and a level of accountability with legal parts in terms of going to court and things like that so because of that they were basically forced into at least taking me to see a psychiatrist to get me at a higher level of medication that might actually work and then also to see a therapist now what actually happened at that point was that one of my caregivers fully left the house for the second time and that's a whole other story and as a result of that I had a little more support from that caregiver who had left the house than the caregiver that I was in the house with still so that caregiver who left started taking me to a new general practitioner not a psychiatrist but a general family provider to get me on a higher level of medication so I from there was put on it worked up to a high dose of serotonin so loft and I was on that for a year and I really did not improve the way I should have it did they need numb but I did not improve and I was having pretty bad symptoms still so they switched me then from an SSRI which was the so loft a selective serotonin reuptake inhibitor to an SNRI a serotonin noripinephrine reuptake inhibitor to see if that would change things and that was called pristique I was on that for about nine months to a year and that was horrific because I started having blackout dissociative episodes which were very odd in that I would sometimes come to and I'd be it be Thursday and the last time I remember existing was Sunday and I'd be like what the fuck happened in the last four days I'd have to check with my friends in school and see if I attended school, which is kind of weird to ask people. I had to make sure I went to work in that time. I was driving, so somehow I was driving and not remembering and who knows what could have happened while I was driving and not being with it. Apparently I was functioning just fine to other people, or at least it seemed like I was okay, but I just lost memories of a lot of stuff and it was very, very, very scary. And also I was just sobbing randomly, like not in the way of depression, but just sobbing randomly and it was very uncomfortable and I finally tried to stick it out and then was like, "I can't do this," and was put back on Sarah's Releane at that hideous and just dealt with the numbness until I could go get more of a psychiatrist in my life, which happens, we'll talk about in part two. But basically I had gotten some level of medication, although not from someone who should have really been prescribing it to me, but I guess it may be considered better than not getting it at all before. And then in terms of therapy, I saw another therapist for like five sessions and then that was over and apparently they somehow got around that. So basically from zero to eighteen, I did not get diagnosed with most of the things that I have and had. So just to put it all in perspective, had zero diagnosis or awareness or treatment of anything until 13. And then at 13, I got the diagnoses of major depressive disorder and generalizing anxiety disorder and was labeled as suicidal. And then it continued on and what was never detected or treated or seen was OCD, just as a compulsive disorder. My social anxiety being a formalized thing, complex PTSD or situational PTSD, my trauma was we're not talked about at all. Panic disorder, minor a divergence was not labeled, my sensory processing disorder, my non-verbal learning disability, the bulimia, the single incident PTSD, the dermatillomania or the tricotillomania, which to circle back I had been skin picking and hair picking the whole time. In some, there's nothing to extensive to talk about other than it was really painful and pretty gross, but it was happening and no one really did anything about it or noticed. I should also say in that list I gave you, I included things that are not mental health conditions, they're not psychiatric disorders, but they all played a part in my mental well being and get my overall mental health and play a huge role at how my diagnosis unraveled and also contributed to them. So they're important to talk about and just speaks to the overall level of neglect that I experienced through that time. And I'll close out by saying that this part of my story as unfortunate as it is, I wouldn't necessarily label anything as full on misdiagnosis and mal treatment from medical perspective mostly because no one really got the chance to actually evaluate me properly and treat me and see me over time. People in the mental health field are already under trained and had to detect some of these diagnoses to begin with, but even if they weren't, no one really got to see me consistently enough to start identifying these things. And of course I didn't have the language to present with these symptoms to then share with them what was going on for them to think maybe something else was going on besides depression and anxiety, right? And also I was an emergent situation where I was so dysfunctional and constantly wanted to end my life. So it was very like dealing with putting up the fire before looking at the entire structure being fully burnt down. So all of that to say this part of my story as much as I did experience a lack of treatment and a lack of diagnosis, that came more so from my lack of access to treatment. And the abuse I was being raised in and the neglect from my caregivers, the absolute lack of awareness of anything related to mental health in my community and my culture and a rejection of me and anything I was experiencing as being anything other than just being problematic and annoying and needy and attention seeking. I was labeled as that by my family and also the community at large when my family consulted with other people, even doctors from my own culture rather than perhaps there was something medically going on. There was something very strange and very painful and very risky going on even if it was within my head. There was no acknowledgement of actually suffering that really just encapsulates that first part of my life. And I did become an advocate for mental health in learning about what I did have. I was kind of the person helping anyone from my community and people at my school and people around me with whatever they were going through to learn that there were things like therapy and medication accessible. Even if I didn't have perfect access to that maybe other people could. So my advocacy did start there. I was the first person I knew of Asian culture to be talking about any of this around me and I'm grateful to have had the ability to lead other people to treatment and access even if I didn't get to have it. And I get to mourn and grieve how much I unnecessarily suffered for so many reasons that I talked about before. So thank you for sticking with me for part one where I just got you up to speed for once I start accessing regular treatment, why it took almost a decade to still get the proper diagnosis and evidence based treatment and navigating abuse from therapists and all the things that are coming together. All the things that are coming in part two. So if you enjoy my perspective and enjoy the space that we're co-creating together to be honest about all of this and just hold nothing back. And if you want to be on this journey with me of self exploration and understanding and compassion and shedding light on all of these topics that need more attention from all of the angles of research and lived experience and advocacy and awareness. And bridging accessibility then stick with me on the show. I would appreciate so much if you could subscribe to the show so that you get episodes first and it really helps me grow this community. And if you could leave a rating and review anywhere you listen to podcasts that would really help other people feel safe and feel like they can trust the show to be a space that would support them too. And if you can share this episode with anyone who you think that this and the show in general resonate with people who are looking for a place to just let their shoulders down and reflect in a safe way on their own experiences and just feel like there's a community and there are people out there who understand and want them to feel less alone. And share this episode with them and share everything on social media and just let's grow this together and create this space together. I'm so grateful and honored for your time and I can't wait to bring you part two next week. See you soon and welcome to a chat with Uma.